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I wake yet again, with a heavy heart as I think of all of the children, all of my dear friends, colleagues, young moms, dads and yes, even myself who will walk into a school building today. I have to be honest, each time there is a school shooting I become hyper aware of the brick and mortar I am entering. I look left, I look right, I take a deep breath and hope that you asking for my ID behind the locked doors is enough to keep us all safe. I try to take solace in the fact that so many of YOU are in the building already and that on this day we will all remain safe. It is a risk and one that becomes more and more immediate and, one that is absolutely absurd, one that I will continue to take, as will all of you.

I come from an age where public school buildings were just that, open to the public. You could drive up, walk into the office at any time of the day with no buzzers, no ID, no nothing. The freedom of those times is not lost on me. That freedom is what we must work our way back to, but as my Dad said on 911, “things are forever changed”. Boy was he right. I just never knew it would continue to get worse and worse. As my career shifted and changed and I moved from one school to many I slowly saw this change of “security” as I encountered one locked door after another. My initial and lasting thoughts are of sheer frustration. I hate the idea of kids behind locked doors. I am annoyed at having to “prove” myself every time I wanted to enter as someone who would do no harm. I know I “should” be happy that these procedures are in place, but I am not. At every turn we lose one right after another and all in the name of fear. And my greatest fear is that we will continue to move in this direction, arming teachers, installing metal detectors and officers before we look at and address the root of the problem. It is time to say NO!

I started watching The Handmaid’s Tale, adapted for a TV series from a book that I read in college, a book that remains torn and tattered on my shelf from those days in the 80’s when I read it and reread it, in sheer disbelief. For me it was one of THOSE books that haunts you for life. The TV adaptation is well done as it is put in more modern times, but to be honest, it frightens me because all of the characters are saying what we are saying about what is going on in this world right now. “They can’t DO this” shout the woman as they lose their bank accounts, their jobs, their livelihood as they drink a bottle of wine together after being escorted out of their jobs one after another.

I flash to my book group where we all discuss the absurdity of what is happening in this country and yes, we are drinking our wine and agreeing with each other, but I can’t help but think about what is going on behind closed doors and how, honestly, powerless I feel. When did WE become so powerless? I have done the marches, I have written and sent my postcards, and I will continue to work to get the right people in office …but to what end? It just doesn’t feel like enough. It NEVER feels like enough. We KNOW Russia intervened with the election and still…NOTHING happens….yet.

In walk these amazing kids from Stoneman Douglas High. For the first time since November (you know which November I mean) I have begun to unearth some hope rising inside of me. It has to be THIS generation with fire in their bellies, that (with millions of 18 year olds who will be eligible to vote this year) need to show up. They did not show up at our last election, disenfranchised with the process and rightly so, but ultimately action is more effective than inaction.

At the same time I feel the need to apologize to all of those generations younger than me that we did not do an adequate job at keeping this country united and safe for all of you.

At a local elementary school this week I was about to have class when a 5-minute emergency staff meeting was called. It was to address the upcoming scheduled walk out in March for 17 minutes; one minute for each child gunned down in Florida. As this is an elementary school they were working to make sure that, if teachers wanted to participate then that was their right and they would work to make that happen. What I appreciated even more was the fierce message that we must protect our kids and that although some may know about what is going on, that many others may not and that protecting their innocence is of utmost importance. While I appreciated this open dialogue I was once again saddened that this had to be a topic. Period.

We chose a career, many of us out of passion; one that was fascinating to us as we work to learn to understand the inner workings of children: the minds and hearts of these little beings that come into our care each day. The kids we each take home with us, the ones that we mull over as we are in the shower, driving to school, the ones who perplex us, the ones who hug us. We are in the trenches each and every day trying to make a difference but the distractions of the world are slowly taking over keeping us from doing what we need to do. Our schools are far from perfect, but the right to an education is what is at stake here. We NEED to preserve this institution to ensure a fair and equal education for ALL in SAFE spaces. Not just the rich and the famous and the lucky, but also the poor, the unknown and the not so lucky. We are so much better than what plays out every day on the media. We just are. And fighting for the rights of each individual is just something we have to do. There is no other choice when you sit in a 3rd grade classroom and watch a teacher read aloud to a group of students who are enthralled with the reading of Wonder, as they discuss empathy, caring, understanding and what it means to be an outcast or when you see a kindergartener make her own book that she is dying to share with you or when you see a table of first graders giggling at Captain Underpants together or when you see 6th graders confer with their teacher on the Civil Rights movement giving voice to how they are personally discriminated against. This all matters. What you do matters. Don’t forget that in the wake of all that tries to undermine that.

I have been talking about a writing project with my daughter Emma for years now about our experience with leukemia. Today she sent me this piece and instantly I thought about piece I had written and submitted to the This I Believe website. My idea is to put our writing together matching our stories as seen through each other’s eyes. The reason we haven’t done this is because I am reticent to open up my vault of pages to her. I always protected her from whatever I could and yet she will be 21 in June. We both have done so much healing through our writing and our audience would be other families experiencing illness.

These pieces also make me think about what the world would be like if we saw each other as others see us.

Love, Laugher and Leukemia

By Mother

I believe in the power of change. I believe in going with the flow and embracing flexibility, fear, not knowing and inspiration through the process of change. I believe we cannot wait to do what is best because all we may have is today. I believe in passion and inspiration and impulsivity. I believe in intuition and improvisation as we work each moment to make it matter. I believe we have one life and one life only. This is not a dress rehearsal and so we must strive for every moment to count. I believe in joy, laughter and fun. I believe we can have all of these things as we embrace the process of life that is forever changing whether we like it or not. I believe there is so much in life that we cannot control that we should strive to make the very best of the things that we can! I believe that life is hard, but stories and laughter and connections with others make it worthwhile. And even though I believe all of these things and more, I still have to make an effort to do all of these things myself whether it is in each day, each hour or each moment. I believe we are here not to forget, but to work to always remember how lucky we really are. And that, my dear friends, is not always easy.

January 20, 1997, Emma was diagnosed with leukemia at the tender age of three and a half. This was the day I was redefined in ways I would never be able to comprehend. That day I left my class of 5th graders and never returned to the classroom as a full-time teacher. That day I was no longer a “normal” mom attending story hour. Playgrounds and swings were replaced with hospital hallways and medical procedures. Play dates and monkey bars were replaced with visiting hours and IV poles. That day leukemia moved into our lives and refused to leave. It set its big ass right down on the couch, cracked open a beer and settled in for the long haul. You could feel his presence when you walked in the door. He was there and whatever I tried to do I could not get him to leave fast enough. It was out of my control. There were days I never showered, days I thought I could not bear the suffering of my curly red-haired, pudgy handed baby and the absence of my 8 month old Zachary. But I did. I just did.

And after four and half years of living in fear, the unthinkable happened. Yes, the unthinkable does happen. Emma was 6 months to being declared “cured” when she relapsed. Yes six lousy months away from freedom and we found ourselves again put in the shackles of a diseased life. It was unbearable. Any ground we had made was gone, forgotten, as new protocols, names of chemotherapies, and the new idea of radiation to her head and spine were thrown at me I could not dodge them as I lodged myself into a corner in of a dark room at Mass General hospital and I just cried, rocking myself back and forth, back and forth knowing that I could not, would not be able to do this again. This and more. I could not do it. I knew it. But I did. I had no choice.

And for every platitude that was thrown at me in the name of comfort I can only reply. God DOES give people more than they can handle…trust me…this was too much. I am NOT a better person for having experienced this. I liked myself just fine thank you before this all happened. I am just a different person. We all have shit. It just comes in different forms. What we don’t have is control. It is not in our power. And as much as we want and yearn to think we have control the truth is that we just don’t. What we do have is the power to embrace each moment for what it is. In the same way we must treasure each individual for who they are and not who we want them to be. We must have our eyes open at all times so that we don’t miss the beauty that resides within the shit.

I can still see my beautiful bald baby sitting in the oversized hospital bed wearing her blue and white silk panda bear pajamas smiling over at me and telling me our new favorite show was on. I would laugh and settle in next to her as we watched those chosen ones run through the aisles of a mock grocery store and try to find items faster than their opponents. The show was as ridiculous as our lives had become, but being with her in that moment was a reality I was comfortable with. I had to accept that I myself could not control the cancer, but I could try to have some control of making it a better journey, to roll with her emotions, to laugh together, cry together, play cards for hours on end, do crafts, read and anything else you can imagine doing. And eventually…very eventually we settled onto the couch and pushed leukemia over and made room for ourselves on that couch too. It was not easy. But we did it.

And so this story that has been written. This story that defined me for so long, for so many years, it not my story any longer… It is a part of my history. It has been written. It is done. And so we move forward to the next story that is unwritten and the one after that knowing that we are all going to die. It is just a fact and looking death square in the blue eyes of my Emma I know this to be true. So we might as well laugh, create new stories, cry, go with the flow, take risks, be free, love, live and try to accept what life has to offer…if even for just a moment.

Emma, 8 years old with Dr. Weinstein and Patricia.

Luxury, Laughter and Leukemia

by Daughter, Emma

“Don’t tell Daddy,” I whispered, leaning forward to slip the words in her ear. The plump red strawberry was clasped between pudgy fingers like a jewel. I brought it to my lips, and the juice squelched as I bit down, slightly sour, but mostly sweet. Strawberry bliss in fluffy white heaven. My temporary heaven: an oversized bucket of cool-whip fresh for the dipping. Mom smiled, and I giggled, giddy. It was the first thing that tasted right in days. The container of ripe red strawberries lay entangled in the hospital sheets beside us. I licked my hands, sticky and pink, destroying the evidence. We were all alone in the white-walled hospital room on the seventeenth floor, the beeping pagers and shuffling rush of the doctors shut out by the thick wooden door. I leaned in close to her, ignoring the tug of the IV in my chest, and whispered, “Don’t tell Daddy!” At three years old, my mom was already my best friend.

We are “freakishly close.” My mother and I. I tell her everything, which I realize is odd for someone my age. We like to call ourselves the Gilmore Girls. It’s us against the world. Sure we don’t have the hundred- mile-an-hour banter down pat yet, and I still haven’t acquired a taste for coffee, but there’s no doubt there are similarities. I am the over-achieving, school-obsessed Rory, and she is my totally-awesome, life-loving Lorelei. We treasure our cozy pizza and movie nights, and dream of seeing the world together.

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Crunch. Crunch. Crrrunch! The snow beneath my feet is unpredictable, supporting my weight in some places, and in others collapsing completely. Our mission: to cross the tundra that is the Exeter soccer field. It is slow going. With every other step, I find myself up to my knees in snow. Even our golden retriever, Ruby, isn’t enjoying her walk as much as usual. She plods behind in our footsteps, leaving the difficult work to us. Deceivingly steady footfalls give way to sinking collapses. Step by step, side by side, we start out on our expedition.

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At three and a half years old, I was diagnosed with acute lymphoblastic leukemia. I underwent chemotherapy and went into remission, where I remained for nearly five years. I relapsed the summer after second grade. To completely eradicate the mutilated cells from my body, I had multiple surgeries, weeks of radiation, and barrels of Gatorade-colored chemo injected into me. I spent countless hours at Mass General Hospital, and for almost every one of those hours Mom was at my side. Like I said. Me and her. Against the world.

As long as she was there, and as long as the visits didn’t involve the “dizzy medicine” or too many unexpected tests, the overnight hospital stays weren’t that bad. I remember telling Mom this once before chemo treatment. She looked at me quizzically. “Really? Why?”

“Because, I feel like, when I’m there, everyone sort of treats me like I’m a princess,” I replied. And it was true. My favorite nurses, the child life specialist who worked in the playroom, even one of the cooks that frequently delivered my meals and snuck us extra desserts. But most of all, Mom made my experience in the hospital better than bearable, special even. We lived there for much of the time, and she turned it into strange home, splattering the room with color. Those overnight stays were almost like secret getaways where I got exclusive time with my favorite person.

I guarded this time together fiercely. My dad constantly offered to stay with me in the hospital so that my mom could spend more time with my baby brother and sleep in her own bed. But, I was stubborn. She was my knight, jester and beloved queen. She knew the drill. And we had secret traditions to uphold.

Mass General closed-circuit TV only had about ten channels, half of which were news. In the morning, cartoons were on PBS, but at night the options were much more limited. Mom and I learned to love the most absurd shows, such as Supermarket Sweep. Late at night, after Dad and Zach had left, along with the majority of doctors and nurses, Mom would curl up next to me in the dark, and we’d watch fools race around grocery stores for money. It was just one of the little luxuries of life stuck in the hospital that we discovered, just the two of us.

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When I tell people that I had cancer, I feel as if I am just asking for their pity. And yes, it was horrible much of the time. Needles, surgeries, nausea, radiation, head rushes, losing my hair, feeling weak, being unable to walk, extremely high fevers. But, I know that I would not be nearly as close to my mother as I am today if we hadn’t gone through those experiences together. No matter how hard I try, I can’t fathom a life without her by my side.

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“So, I don’t think you’re allowed to leave me next year,” Mom exclaims. Our march through the tundra isn’t getting any easier. The vast white plains seem to extend for miles ahead. “This means I’m going to have to live alone with just boys!” She looks over at me, pausing to give me a disgusted ‘they-have-cooties’ face. I chuckle.

“Yep” I reply. “I feel bad for you.” My foot plunges through the top layer of icy snow to yet another unseen hole in the ground. We are following the paths of two previous explorers, thinking it must be easier to follow in their footprints. The trails run parallel behind us, but out ahead they begin to diverge slightly.

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I am not my mother. So many people after meeting us insist that we look exactly alike. But I don’t see myself as my Mom. Whereas I fantasize about fame, glam, and changing the world in one fell swoop, she is happy pleasing herself and the people around her, helping one person at a time. I prefer fantasy and sci-fi, and dreaming up new worlds, while she prefers memoirs and realistic fiction. However, she sparked my love of books and writing to begin with. She taught me that I have a voice worth hearing.

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One night when all four of us were home together, our parents put me and my brother to bed. Feeling better than normal, I was bouncing around the bathroom and in the hallway with Zach before Mom and Dad made us retreat to our own rooms. It was the usual routine. Dad would lie with Zach while he fell asleep, and Mom would rub my back, usually until she fell asleep. She sang to me. Jonathan Edwards and Carole King were my lullabies. Her words would fade to whispers as she drifted into dream world.

On this night, before she turned off the lights, I rolled over and looked straight into her soft, blue eyes. “Mumma?” I asked. “Am I going to die?” The question had just occurred to me for the first time, and surprisingly, it didn’t scare me. But I wanted to know, and, no older than four, I looked for her guidance as I had with everything else. I knew she would have the answer, just like she had the answers to all the rest.

“Do you think you’re going to die?” She looked right back at me, never flinching or looking away. Her voice was tender, inquiring, soothing. She was asking me, I realized. And suddenly, the power had shifted over to me. My opinion mattered, in this moment, more than anything else. I had the last say, and my reply truly was the right answer.

“No.” And I didn’t.

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I was absent for most of third grade, worn out from treatment, infections and trips to Boston. Even when I did make it in, I hardly ever stayed for the entire day. When I was home, I lived on the green woolen couch in our wine-colored living room. I watched endless hours of mindless television, too tired and queasy even to read my favorite books. Nancy Drew and Harry Potter – the mysteries remained unsolved.

The pile of schoolwork next to me grew higher and higher. I looked at it with disgust, as if I was staring at my own weakness. Used to being one of the smartest in the class, I had no idea what any of those handouts and worksheets were about. Dad encouraged me on the days when I didn’t go to school to try and make a dent in the pile, and I tried. But the lessons in the books were impenetrable, and my endurance never lasted long. Everything was different in my world. I was losing control. Even my room seemed like a distant memory. Dolls left untouched, and toys left unorganized. One time I crawled to the top of the stairs and cried. I was helpless and worn and everything in my own home seemed foreign, every task like work.

“Listen to your body.” Mom would say. I knew best what I could do, and therefore I had the last say. She gave me the power to stand up and speak for myself. I let the pile grow; resting was the first priority.

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Throwing down my hundred-pound backpack, I made the house shake. Mom asked how my weekend looked, and I replied with the usual complaints and a long list of things to do. It’s the first week of winter term, but it feels like I never left. So much to do. So little time.

She looked at the backpack, bulging at the seams on the floor, and then up at my worn face. “I dare you, at some point before you graduate, to get a bad grade in a class.” Then she said, “Let’s take the dog for a walk in the snow.”

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My mother is a free spirit. As my dad says, when he first met her she was a “granola.” Long, frizzy, dirty-blonde hair and baggy, earthy-toned clothes. She’s known since she was a toddler she wanted to be a teacher, and her passions have always been literature and writing. Although her hair is shorter now, and her clothes blend in a little better, my mother is still pretty much a hippie. Our house is filled with words: books, framed poetry, and wall hangings that say “believe,”“hope,” and “intend.” Peace signs and angel cards, heart-shaped rocks collected from the beach, and cairns. She is powerful and very opinionated. She isn’t afraid to share, argue and defend her claims before eventually agreeing to disagree. She believes in the power of intention; that if we just believe in something enough, it will happen.

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“They’re slobs! And they’re going to drive me crazy! Who am I going to complain to once you’re gone?” Her voice is shrill, and slips even higher at the end as she pulls her foot out of a particularly deep footprint.

“I know, right?” Part of my sarcasm is lost as I call back to her. Her face has turned red from the effort. Our different routes have spread several feet apart now, and up ahead the crusty powder is almost untouched. The paths already trodden have all but disappeared. It’s up to us now to pave our own ways.

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The hospital was an unanticipated safe-haven for us. Mom was less worried about something going wrong, and for me, the contrasts between sick and healthy became less apparent. When I was there, I could concentrate on getting better. I didn’t have to compare myself to my former self, or to others around me. In the hospital I was still weak, but no one saw it. Within those walls, I was normal, or better than normal, a princess.

I hated food. Another one of the glorious effects of chemotherapy is that it changes your taste buds. I lost half of by body weight. My favorite foods, pizza included, tasted simply wrong, and time after time, I struck out. I would have sudden epiphanies, when random meals or snacks would become obsessions. That one thing I hadn’t tried – it just might be the one thing that still tasted the same. Pasta with cheese and butter, goldfish (which my uncle went on a wild goose chase to find in Boston), chicken pot pie, and humus replaced pizza, grilled cheese, and peanut butter and jelly. Mom did whatever it took to get me to eat. Even if it meant strawberries and cool whip for lunch. I was the princess.

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The princess sometimes had to leave the tower. Unlike the seventeenth and eighteenth floors that had become familiar and which were filled with smiling faces waiting to please me, the waiting and pre-surgery rooms on the lower floors of the hospital were scary. None of my little comforts were allowed in this cold, swift-moving wing. The moment we got there we were swept into a changing room where I had to strip off all of my own clothes and replace them with a stiff hospital gown that left me cold and exposed. My parents had to wear alienating blue scrubs and masks. The room down the hall was filled with machines, and abnormally tall hospital beds. Once I was placed on top of one, I was trapped. And everyone and everything whizzed along around me. The colorful bears and balloons painted on the walls were more creepy than comforting. A preschool gone wrong. Mom’s concerned eyes and liquid voice were my only consolations.

I despised the anesthesia and the entire prepping process. I was hysterical in my fear. I knew what was coming and I never got used to it. An alien doctor pulled up a stool and a syringe and ejected fluid into my IV that sent my head spinning. The medicine immediately vibrated the insides of my brains. Mom’s voice and firm hand in mine began to fade as I squeezed my eyes shut and struggled to remain conscious. I was leaving her, and there was nothing I could do about it. Washing away, it was all I could do to keep her there. I called out to her, begging for her to help me, to come to my rescue like always as I slipped away. “I’m diiiizzzzyyyyyy….!!!!”

I would awake from those artificial slumbers in a completely different place. The nurses once again were smiley and eager to provide ginger ale and saltine crackers. The happy bears were gone, and the world was no longer in a hurry to send me away. Post-op was filled with new faces, new setup, and new wallpaper. But she was still there by my side. I always came back, and she was always there waiting. Her tired face flush with relief. Her soft fingers laced with mine. When the groggy left my head, we started talking about the shopping trips that we would take after. Wherever I wanted to go. The Christmas Tree Shop was my reward.

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I had a lot of nightmares when I was sick. I would wake up in my room at home, and have visions of giant alien monsters coming to get me. Sweaty, my heart pounding, and frozen with fear, I would scream and scream down the stairs, calling out for my Mommy, my savior. Enclosed in her arms, nothing could go wrong. I was safe from all the nightmares and from harsh reality as well. Vanquishing the monsters and returning to peace.

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“Wanna Gee-Gee?” is a common question in our house. We own all the seasons, and have watched them all the way through multiple times. We plop down on the couch, and snuggle up under a blanket, our toes still cold from the walk. I switch on the DVD player, and we start belting out the theme song. “If you’re out on the road, feeling lonely and so cold…” She shivers as she takes a sip of hot tea, and we both smirk as we catch each other’s eyes.

It still hasn’t hit me yet that I am a senior. Although I am definitely beginning to understand senioritis, I haven’t really started thinking that much about leaving next year. I guess I am in denial. Although I spend the majority of my time on campus when school is in session, I am still a day student, and in many ways a homebody. I have left home before, for summer camp, and I know that I can make it on my own. I know I can carry the huge backpack around day after day. She has taught me to be strong. Still, I am afraid to leave her, to venture into the white unknown alone. My consolation is knowing that when I return, she will always be there, waiting. “Winter, spring, summer, or fall, all I’ve got to do is call, and she’ll be there.”

Life in New Hampshire is such that when the end of January comes along, many of us look pale, tired and have large dark circles under our eyes. Others are sick, have been sick or are getting sick. Many are irritable, between vacations and stuck inside without recesses because somewhere along the line we stopped letting our kids out to recess if it goes below 32 degrees. We LIVE here! Let the kids out, if even for 10 minutes to get blasted and blessed with some fresh air, be it arctic air to bring them back to life disperse some of those germs into the great outdoors.

Even the trees feel Januaryied!

So this year it occurred to me that everyone looks and is “Januaryied”. Yes, Januaryied. It is my new verb and the funniest part is that when I ask the simple question, “Are you Januaryied?” most just respond with a look of “why yes, I am totally Januaryied.” No explanation needed.

It is at this time that most of us dream of white sandy beaches, palm trees and yes those lovely drinks with umbrellas in them. And in this age of Face book we can see others who ARE on sandy beaches, wearing bathing suits, and nursing sunburns…oh the sting of envy is a painful one indeed.

A Walk in the Woods by Tomasen

Winter Sky reveals a glimpse of light.by Tomasen

We can’t help ourselves. We are stuck in the tundra with no escape from the frigid temperatures we have lived in and through, with smatterings of 45 degree days that melt away the snow leaving the next frigid 10 below day with ice everywhere and very little white snow to adorn much of anything, leaving bare, grey tree branches poking the underbelly of the sky. It is dreary. It is forever grey. It is January.

But alas, we made it through January and now find ourselves in February. And this February has been a doozy. Another day, another snowstorm and what used to feel magical now just seems like another chore that has to be dealt with. Snow shoveling, roof raking to avoid those incessant ice dams, and clearing off the car just one more time before leaving. February, where one would think we are that much closer to the end of the long winter. The days begin to lengthen and one can actually see outside at 5 o’clock.

Miss Ruby Frolicking in the snow.by Tomasen

This winter I have attempted to walk my dog, Ruby where I end up in the field in time to watch the sun set. I can’t see sunset from my house, and this new routine has allowed me to see that additional minute or so that we begin to gather each day. What I have noticed most is the light, the evening light that inspired this poem:

In The Blue Hour of Evening Light

evening light

comes too soon

against the blue hued

mounds of snow

the light no longer lingers

but quickly dips and dives

into the warmth of the horizon

Evening Light by Tomasen

evening light

a glowing luminous light

proclaiming the passing of yet

another day

evening light

hangs in the distance

momentarily suspended

as my cold feet stand rooted

Evening Lightby Tomasen

in the deep snow holding me tight

from diving down to catch the light

and hold onto it desperate to

keep the dark away

evening light

casts short shadows that

play with the snowlight

broadcasting indescribable pinks, purples

More Evening Light by Tomasen

Hues of Bluesby Tomasen

and so many hues of blues

for all to watch

if they are looking

evening light is the light I choose

to walk the pup

to pay homage to the end

of yet another day

to rejoice in day’s visit

that lingered a little bit longer today

evening light

I dream of your summer stays

when I come to life

and I can dillydally with you

into the night.

evening light…

There is hope in February and that hope is even better when coupled with a bonus snow day like today. Kids are giddy with the prospect of no school as they wait in anticipation of that final phone call, or these days, tweets! Teachers can take a breath and slow down and let their defenses down for a day of home in an effort to ward off all of those nasty bugs, and flu’s spread so easily within the brick and mortar of schools where kids are constantly coughing, sneezing and wiping their noses on their sleeves. Man, those noses just never seem to stop running. Blech!

I still get that excitement about a snow day because a snow day is a lazy day: it gives me permission to read and write and build a fire and just “be” all day long. Like a kid I can’t wait to go out into the newly fallen whiteness and feel the wonderful moisture in the air. Snow is magical again. And as much as I have been dreaming of those warmer climates, I don’t know if I could ever imagine living in a place where there was never snow! But if you ask me this when I am Januaryied, you can be sure my answer will be that I can’t wait for the day when I move to a warmer year-round climate, where I don’t have to endure the harsh, frigid everydayness of winter.

Zach and Ruby on one of MANY snowdays.by Tomasen

And so in honor of this snow day I leave you with Billy Collins and his poem, Snow Day. Enjoy.

The poetry of our (collective) past was often presented as something that was only available to those chosen few who may or may not find the many levels of hidden meanings tucked in between the lines. Every time I bring poetry to my teachers, there is a group squirm in the room as everyone shifts in their seats and falls back into their past experiences with poetry.

You will find poetry nowhere unless you bring some of it with you.– Joseph Joubert

Poetry was not available and many hold fast to the belief that it still isn’t. But thanks to modern day poets such as Billy Collins, Mary Oliver and even those of old such as e.e. cummings, poetry can be accessible to all. With a little patience and practice some even come to enjoy poetry.

We just need to shift out of our old habit of thinking we “won’t get it” and realize that what we take from the poem is enough. It may just be the sound of the words or how they are arranged; it may be a line that strikes the soul, or an adverse reaction to an image. Whatever it is, it is for us. Poetry can move people to their own “edges” if you will, asking them to work and think a little bit more and little bit harder, what does that mean?

“Poetry is a deal of joy and pain and wonder, with a dash of the dictionary.” Khalil Gibran

Social Media has also gotten a bad rap, especially when we are having conversations about our youth. And while we might be concerned about the growing evolutionary thumbs of this next generation and their inability to communicate face to face without a device are worthy concerns, there is the upside to this wonderful world of technology.

One is the meeting of poetry and social media I encountered these past couple of weeks as poetry swept it’s way onto Facebook and flooded my feed with fabulous poets and poetry. The way it worked was simple. Read a poem posted by a friend and if you liked that poem they would send you a poet and you in turn posted a poem by that assigned poet.

I can only wonder how many hits poetry.org and other such sites got this poetry month. It was a treat to go onto Facebook wondering what poem or poet you would see next. It was also interesting to see what new poets might come up. And even if the poem was one I knew, it was nice to be revisited by old favorites. Some even went so far as to research their assigned poet, posting photos and biographical information as well as a poem. There were side conversations about how many poets some knew and how thrilled others were to be introduced to new poets. Others felt “out of their league” but quickly immersed themselves in finding the perfect poem. Some began the process of identification as one who likes and dare I even say might consider writing poetry.

I can’t tell you how many poems I added to my poetry folder for future teaching! There was a crazy wonderful poetry community created through social media with people across the country that never would have been possible without social media. It was, if I may say so myself, pretty damn cool!

And then we come to the Common Core where poetry is not mentioned, named or listed in any categories in the entire document. And while the intent was not to eliminate poetry, that is the interpretation of many. Schools are reading this document as a curriculum even when it clearly states that it is NOT! But the subtle, or not so subtle message underlying the omission of poetry is that what is not listed will not be tested; therefore precious time will not be wasted teaching it. Schools without Shel Silvserstien, Prelutsky, Roald Dahl, A.A. Milne, and Sharon Creech will be very sad places.

While I realize you have all heard me rant and rave on about the CCSS nation wide hold on education, I do not believe I have given it’s history justice and so I direct you here to a link where Diane Ravitch lays out the history of the Common Core and it’s daunting predecessors.

Diane Ravitch

I believe this history gives context to why we are where we are and how incredibly insipid it is. I believe anyone who has any stock in the public educational system needs to read this. I would like to see this article go viral. The more we know the more we can begin to understand what is at stake.

And so I leave you with my assigned poet (by the fabulous Children’s poet, Amy Ludwig VanDerwater, who you must check out at this link) and the words of ee cummings: enjoy, savor and just take it in for what it is, let it linger on your tongue for the sweetness that it is and nothing more or less.

i will wade out
till my thighs are steeped in burning flowers
I will take the sun in my mouth
and leap into the ripe air
Alive
with closed eyes
to dash against darkness
in the sleeping curves of my body
Shall enter fingers of smooth mastery
with chasteness of sea-girls
Will i complete the mystery
of my flesh
I will rise
After a thousand years
lipping
flowers
And set my teeth in the silver of the moon

And as the world goes, I read this post to my daughter, Emma and she reminded me that her choir in High School sang this poem as composed by Eric Whitacre. Love the connections! And while we don’t have a recording of her choir, here is a youtube link to another choir singing it. Glorious!

There are so many ways to tell a story. We just had an intimate celebration of my Dad’s life for those who knew him. It started with cocktail hour and then it was story time. I heard so many stories about my Dad that I had never heard. I loved hearing about his life as a boss, a friend, brother-in-law, Bumpa and of course as a father. In the words of Eben Alexander in his book, Proof of Heaven he writes, “A story–a true story–can heal as much as medicine can.”

So how was I going to talk about Dad in 10 minutes or less and really give a sense of who he was to me? I was thinking about the text, “Days With My Father” which started on line and is now a book, but that did not exactly capture what I was hoping to do as it only reflected the end of his father’s life. I wanted more than that. And then I thought back to the last time I wrote about my Dad, using Wallace Steven’s, “13 Ways of Looking at a Blackbird”. I wrote up 13 Moments with Dad and took it to the service.

I only got through maybe half of them, but then as I went back to the piece I didn’t like it. I envisioned something different and then I remembered the book, The Encyclopedia of an Ordinary Life. If you have not read this book then it must go on your list to be read. I scoured my shelves and re-worked the piece again. I am thrilled with the possibilities and so I will share a few of them and they are rough. There are so many that have yet to be written, but this is where I am now and I am still struggling with each subtitle as well as how many to write. Yet another piece of writing that is never done, but is just done enough for now to make my point here on this blog, that writing and thinking takes time and that honoring where our students are in that moment is priceless.

And again, while I realize this is a very personal piece on an educational blog and even somewhat self-indulgent, I have come to realize that living a literate life is very personal and that we need more of these personal connections to allow us to see each other, face to face.

So here we go…

A Daughter’s Encyclopedia of Her Dad

A for Always

“You need to leave the hospital right now, ”Dad’s voice echoed, quiet yet firm. After 13 days of never leaving my leukemia-ridden 3 and a half year old Emma’s side, she was overdosed in one of her surgeries. My Dad was the first to arrive and he was the only one who told me to leave. And so for the first time I left. Dad drove me home to see Zachary and spend one night out of the hospital.

What I have come to realize after his death is that no matter what Dad had my back. I just knew that if I ever needed anything he would have been there and just knowing that keeps you from ever really needing anything at all…

“This too shall pass”, my Dad’s words of wisdom he shared with me when in the throes of Emma’s illness. And eventually it did.

B for Best Friend

My best friend, Krissy stopped by to say goodbye on her way to her new prep school hours away, Northfield, Mount Hermon. As we stood in the driveway sobbing together and lamenting our impending separation she said, “Why don’t you come too?”

And so I went and checked out the school, knowing that we did not have the money for me to go to private school, but interested to see where Dad had also gone when he was younger. (That was a story we all knew too well. How he hitchhiked there 3 times and begged them to accept him and yes, they finally did. “It changed my life,” he would say. ) Did I need my life to be changed?

He walked into my bedroom, pitch black and through the darkness he just said, “If you really want to go to Northfield, we will figure out a way to make it to happen.” And then he left the room.

I did not go. I didn’t need to go. I think I just needed to know I could go.

C for Call

I picked up the phone to hear Dad’s voice. “I haven’t seen you in a while.” And I would tell Dad what I had been up to and he would listen and respond. One day I was telling him the latest woes of parenting and he stopped me and said, “You have raised great kids.” Again I was left silent. The man of few words was speaking… and he was saying something from the heart. “No, I mean it. They are great kids. You have done a really good job with them.”

What he could not see were the tears running down my cheeks as I flipped the bacon and then Mom got on the phone. Per usual at that point he would make his exit and say with sarcastic contempt, “Well I will let you two talk for the next few hours” and he hung up.

And what he needs to know is that he too has raised 3 really great kids.

D for Dancing

I made my Dad do a Father Daughter dance at my wedding. My mother had often lamented at the lack of dancing and nights out on the town with my father. He resisted the idea of that dance, but just like one day when I came home from college and hugged my parents and forced my Dad to hug me back, I forced him to do that dance with me. Not only did he dance, but he even did it with a smile.

But you must know that dancing with my Dad was more like standing in the middle of a floor where there was music playing and making slight shuffles to the right and to the left. Rhythm was not really involved, but even standing there as he held me in dance position, right arm up left on my waist was enough. And Mom, I don’t think you missed much not making those nights out dancing with Dad!

E for Employee

As a new summer employee at my Dad’s newspaper, The New Hampshire Business Review, I was excited to finally be a bigger part of the family business. I envisioned learning the ropes of journalism and seeing what made a company tick. I was assigned to work for my sister under the term “data entry”. Day after day of entering information and categorizing it. God forbid I actually ask a question of my beloved “boss” as she would look at me in disgust and say, “I already told you how to do that!!” Never before had I felt like such a peon in a job. Even waitressing was easier than trying to fit into this very tight system that had been established so many years ago where I quickly realized that being a family member only meant there were higher expectations of you and no family bennies whatsoever. In fact, it began to seem like being family was more of a curse than a blessing…at least at the office!

One day while I was sitting in my Dad’s big black chair and spinning around like I used to when I was little I opened his top drawer to find a pen and instead I found a one and a half inch stack of checks. My gut sank as I looked to see that the check on top was made out to Don Madden. As I flipped through them all the same name appeared over and over and over again. A flipbook of Don Madden checks and the implications that he was paying everyone else made me gasp. His investment in this business ran deeper than I had ever realized.

I finished that summer and never complained again. It was my last time working at the paper.

F for Faces

Hey, do you see the face?” Dad would ask as he pointed at a picture, a painting or even out the window at a tree. Whereupon we would all look and sometimes we might see it and others we would have no idea what he was seeing. He “saw” things that others did not see be it in the visual, looking out the window or into the future political arena.

Since my Dad’s death I have started to “see” faces everywhere!! I am taking an intense course to become a yoga teacher and in that course we are studying anatomy and all through the lessons I see faces. Faces on ovaries, kidneys with eyes staring at me and then the profile of a young man peering out of the liver. Every time I see one I say hello to my Dad and am forever reminded that we must look, look and then look again with an open mind and you never know just what you might “see”.

H for Hugging

Hugging. From that day forward every time I saw my Dad I hugged him. Over time he came to expect it and dare I even say that he might have even leaned in first once or twice himself! He was an interesting hugger, more of a leaner really, but still I didn’t care. Some say huggers are buggers, but eventually they give in and realize that hugging isn’t so bad after all.

I for Indulgence

“Daddy, will you PLEASE do your Donald Duck voice?” we would plead for hours on end and usually the answer was no. To this day is amazes me how few times we actually heard it and it was something that tickled us pinker than pink as we would laugh and laugh. What was it that kept him from wanting to do it more? To indulge his kids just a few more times and yet if you think back, it made it all that much more incredible when he did it. “Less is more,” he would say if he was helping me with my writing. “Less is more”

L for Late

Driving home after curfew one night in the yellow bumblebee I devised a plan to pick up some speed down Page Road and then cut the engine and drift into the driveway with the lights off in hopes that I could “sneak” in and not be discovered. As I turned in, the car slowly moved towards the barn, activating the sensor bathing me in bright light. Damn, I thought as I began to open the car door and realized there was movement all around. As I looked closer I realized I had coasted into a sea of raccoons. Big raccoons, little raccoons, raccoons swarming the car and coming towards me. I slammed the door and began to scream, “Dad!!” “Dad!!” Of course he couldn’t hear me and so I layed on the horn. Eventually Dad appeared in his boxers and shooshed all the raccoons away, saying, “Get outta here ya saps!” As he was getting rid of them I made a dash for the house. He followed me in and said, “You’re late.”

M for Moving

“I am calling to check in with you because we looked at a house in New London and well, I just wanted to be sure that you were okay with that.” I paused in disbelief. Was my Dad actually calling to ask me about their life decision? The silence lingered and he said, “Are you there?” “Yes Dad, I am here.” “Well, you and your mother spend so much time together and well, I just wanted to know what you thought about us making this move.”

“Do what you need to do Dad, and I will be fine.” And as I hung up the phone it occurred to me that our relationship had shifted so dramatically over the years but that I hadn’t even realized it. The older he got the more he said and the more he said the more I listened. I am so glad they lived nearby for 10 years.

S for Swearing

Dad announced as we sat on the lime green carpet during a major heat wave in 1975 that we were going on a family vacation. Lisa, Jamie and I screamed and shouted with joy as visions of Disney rides and beaches and pools danced through our heads he said we needed to pack as we would be leaving at 4 in the morning just to get a good head start.

We woke at 4 filled with Christmas morning anticipation and settled ourselves into the blue paneled station wagon. Lisa and I settled into our makeshift bed in the very back complete with blankets and pillows and Jamie in his own bed in the middle seat with the cooler. Little did we know that we would never get out of the car except for the occasional bathroom break and over 14 days and 4,000 miles later having seen all of Newfoundland and even Labrador. Oh the stories from that trip!

It was the first time I ever heard Dad swear as he got back into the car at a random gas station as Mom was handing us snowballs and candy bars to keep us quiet and we were fighting over them and anything else from being in such a confined space for too long when Dad snapped and yelled, “All you kids do is fight, fart and swear!” I remember thinking…did Dad just say fart?

T for Tomasen

My name. Thank you Dad for making up the most incredible, bestest, most awesome name in the world just for me. Something about having my name always made me feel like I was different. (It also helped that Lisa was actually a tiny bit jealous of it too as I was jealous of most everything she had, especially that incredible cassette recorder she had in Weare, but I digress!) What I love most about my name are all of the stories it has generated. As a man of stories, and as a great storyteller I would imagine you might have thought, what kind of name would bring great stories?

W for Wondering

“I would like to come over, there seems to be something wrong with my computer.” He would arrive, laptop under his arm, and I would pour the coffee as he would begin to describe in detail just what was or was not happening with his laptop. We would sit together and I would map out the steps, write them down and he would thank me profusely for being so patient with him. “We always knew you would be a teacher,” he said. “The hours you would spend in your room with all of those imaginary students, we just knew you would be a teacher.

During one of those visits he told me that he was ok with dying. He talked and talked and told me that I was the “listener”. I didn’t know what to do with that information today as I wonder…years later…if he would have said the same thing on the day he died.

So, as you can see there are many pieces missing, many in process, and just a sampling of an attempt to remember the stories of my Dad.

Jeff Wilhelm in his book on narratives tells a story about a decision-making process one of his kids was making and asked this question, “Which decision will make the best stories?”

My Dad’s life in stories was what he would have hoped for. Of that I am sure. What I am not sure about is how many stories are still out there, untold, about my Dad and about all of those students we work with.

We are only as good as our stories and honoring those should be a part of our daily work with students, whether reading them, writing them and absolutely always celebrating them. Period. I mean, in the end, what else is there really?

The other night we stumbled upon the movie Forrest Gump. Man, I forget what a great movie it is on SO many levels. The scene that really made me pause was when Forrest’s mother, played brilliantly by Sally Fields, is at the local public school and the principal holds up a life –sized graph with 3 sections. He points out the top section and says this is Above Average, then to the middle section indicating Average (duh!) and then to a point in the Below Average section stating, this is where Forrest lies. Her response is what I wish all of our responses are to the numbers we use to sum up our youth, our schools, our teachers and beyond. She looks at the Principal like he has lost his mind when he says Forrest will need to attend a special school where she retorts in her perfect southern accent, “Oh for God’s Sake, It is only 5 silly little points, the boy will be going to school here.” And that is the end of the scene. Soon after you see Forrest getting on the big yellow school bus.

Of course as you watch the embedded history lessons and how Forrest had a hand in so much that we never knew the one line that really sticks out is “Stupid is as stupid does.”

And that is where we are in education right now. Stupid is as stupid does. We are so caught up in those graphs and charts and data that we cant even see what is right in front of us. The more I hear the more stupid it all becomes and I think we need to be more like Mrs. Gump and stop giving these tests and everything that surrounds them so much energy and weight. Part of the problem is that there are so many stories, myths and misconceptions around the Common Core that nobody even knows what is going on.

Did you know there are some schools here in New Hampshire who are saying “NO” to the Common Core? And while they ARE being penalized in terms of funding, losing about $100,000.00 they are looking forward realizing that to implement the tests surrounding the Common Core is going to cost their district over $200,000.00. Why are we so incredibly short sighted when it comes to these top down mandates. What are we so afraid of?

I have said it before and I will say it again, if my kids were starting in public school right now I would get them out! Or in the words of Jenny, “Run Forrest Run!” Run from the shackles of numbers and testing! Our kids are being used as lab rats and caught up in a sea of bureaucratic and political snares that have nothing to do with a better education for each. Our educational system is being bullied into the dregs of privatization where companies can and will dictate what happens in our schools.

Pearson already is! Pearson is an enormous conglomeration that has tentacles that reach into more areas of education than you cannot even imagine. This octopus of a machine has created the tests that children will take that are too hard on many levels. The other day I was sent a link to the Smarter Balance site where I could go in and “take” the test at many different levels. I chose 3rd grade and went to the LA section. Immediately, I thought of all of the hundreds of 3rd graders I have worked with and my anxiety level started to rise. The first question is about a Chinese child, Little Lang, who is learning his or her characters. I think of those who don’t have the background knowledge that Chinese characters are letters. This character goes off with his brush…how many 3rd graders “write” with a brush? And it just goes from there. At the end there were multiple questions to answer and of course lots of places for written responses.

As a highly analytical person I can often see at least 2 very distinct answers that “could” be true or right. And after that question I went on to the second one and then realized this was only 2 out of 50! And that is JUST the Language Arts section.

And once the numbers come out we will see exactly what these tests are designed to do, to create a new narrative of the epic failure of our public school system. But as with every magical story there will be the night in shining armor who will show up in shiny new textbooks wrapped in bubble wrap, a colorful collage of books and workbooks to fix all of your districts woes in one fell swoop. And the publisher will be….yes, you guessed it, Pearson. The one who set up the tests in the first place.

And even more disturbing is that if you are really worried about test performance Pearson has test prep materials ready for sale to get all of your little lemmings in line. In fact one teacher in New York City found one of the exact prep test questions on the “actual” test! The message again? If you want to do well on these tests then you must have Pearson test prep. Do you see the irony here? Do you taste the incredible conflict of interest?

There are many things that have started to rumble around the country that give me hope! One group of parents in New York State sent all of their kids test scores back to the school and the company. Great! But the kids still had to suffer through the tests! Other groups are opting out of these tests and the more we get on board with this the more likely is that we can take back our educational system and begin from the ground up to rebuild it. Top down…stupid is as stupid does.

A link to Fair Test listing the many ways to Opt Out locally and Nationally: http://www.fairtest.org/get-involved/opting-out

And although this video is showing up all over my Facebook feed I am going to link to it here as well because this kid has guts and makes some great points!! Again, he gives me hope. Imagine if more of our students stood up for what they think is right and just and fair.

He is something huh? And as Forrest says “Momma always says life is like a box of chocolates, you never know what you are going to get.” In this case, if you dig to the bottom of the box you can see quite clearly what we are gonna get, and it tastes nothing like chocolates!!

The buzz of Mentor Texts has been around for quite a while now and while I like this idea, what I don’t like is that our young writers are often instructed to use a particular mentor text for a given time as assignments. Using a particular structure to do this, instead of exposing them to a variety of ideas and texts and then helping and guiding our students to figure out what would work best for them, the writers.

What would happen if we asked our young writers to first think about what it was they wanted to say, to write about, to read about, to discover and then come up with the best way to express this?

When my daughter was first diagnosed with leukemia I kept a journal and wrote down every single little detail of our experience. It was exhausting to get onto those pages all that I felt I needed to. Her every reaction to every drug, the times she received the doses, the different emotions experienced, missing my 8 month old at home. I quickly fell behind and was angry that I was missing so much of what I thought I needed to get down, in the name of control.

Book of Poetry by Dan Rothermel

And then one day someone brought me this small book called, Sweet Dreams, Robyn written by Dan Rothermel. It is a collection of poems he wrote about his daughter with cancer. This book transformed my writing life. Suddenly, I had the permission and allowed myself to write in poetry finding it easier to get down all that I wanted to without getting muddled in all of the pros it took. In the words of my Dad, “less is more” in writing.

With the death of my father I had this same experience as I was meandering through the blog world I found a blog that just spoke to me. She writes a fictional piece about the death of her mother and says,

“It came together when I was working on a blog post about Wallace Stevens one of my favorite poets. His “13 Ways of Looking at a Blackbird” was on my mind while I was reading Paul Harding’s Tinkers.”

Her mentor Wallace Stevens gave her what she needed to capture what she wanted to write in fiction and I instantly knew that this too would be the perfect way for me to capture and process my father dying. Snippets of strong images that I needed to get down on paper and so her blog became my mentor text. It was more than perfect.

So here is my version, based on the ideas I stole from her that she stole from Wallace Stevens.

13 Ways of Looking at Death Just Before, During and After

I

I called him on the phone, his voice weak and wavering as his hand fought to keep the phone still. “Hey Dad, how are you feeling?”

“Bad. This is Bad. What I have is really bad.” I cringe, as I know he knows it is bad. Sepsis. Blood infection on top of pneumonia not to mention his COPD, heart disease and diabetes…

He has never said it was bad before. He always said, “It is getting better.

It is bad.

II

His oxygen cord lies on the dirty floor as it takes her a moment to realize there are no lines crossing his face, lines of plastic jewelry tubes that have become as permanent as his glasses. He is not getting any air.

And she wonders…just how long has he been without oxygen?

She calls the nurse and insists he gets a new one. Nurse never responds to the absence of his air or how long he has been without it.

Idiots.

III

She is alone with him, Red Sox images flashing in the dark room, sound blaring while she simultaneously plays Candy Crush. He wakes, peers over and says, ”You are still here? I really appreciate that.”

I smile.

And we go on like that for hours.

The Sox won.

Won the AL East Title. He is not aware.

She hoped it was a good sign.

She is always looking for signs.

IV

Today is a good day. He is out of bed, sitting up in the hospital chair as she enters. He starts talking, “You know I sat up all night trying to remember the kids names.”

She thinks it must be all of the grandkids that he is forgetting…he continues…

“I know I have 3 kids. 2 daughters and a son.”

“Yes that is right” she replies, as he looks up at her and says, “The first daughter is Lisa.”

“Yes Dad, Lisa is your first daughter.”

“Then there is another one, you, what is your name?”

Her 10-year-old self emerges and screams inside, YOU named me Dad!! Don’t you remember? I have the coolest name in the world because YOU made it up.

That’s enough of this name game.

We gotta get him the hell out of this hospital.

Me, My Dad and Lisa

V

My once virile father sits perched on the kitchen island pursing for air. How did he get in the house so quickly? My brother in law carried him in, like a baby in his arms, but he was amazed at just how heavy he really was, all filled up with 9 days of hospital IV fluids so he had to stop to rest.

We still laugh at the absurdity of my Dad sitting with his feet swinging on the kitchen counter. Who says you don’t go backwards?

He then carries him the next leg into the bed where he will remain until he dies.

VI

Each breath is a struggle and you can tell it actually hurts. Never mind when he coughs. He just wants to feel better, but he doesn’t really as he tries to negotiate in his head that he is now home and how he thought being home would make him feel better…but he doesn’t. Now what? You can see it coursing across his forehead like the GMA banner in Times Square. Now what? Now what? Now what?

VII

Doctor came to the house. Yes, in 2013 a Doctor actually came to meet the needs of his patient. There is a God. (See previous post on Systems)

Dad chose hospice. Visions of nurses, social workers and support at our side danced her head as she wondered…does he really know what he is choosing?

She is sent up to the Local Colonial Pharmacy to get the “hospice kit”. A box filled with drugs and lots of other things medical that you don’t want to know about never mind even think about using.

She is the chosen one to give her father his first dose of comfort packaged in a needless syringe to be administered orally. Flashbacks of shoving chemo filled syringes disguised in chocolate pudding to her 3 and a half-year-old smack her in the face.

Click…she re-enters that mode and just does what she has to do. She has been here before and she just does it. Nurse Ratched is back in the house.

VIII

My brother arrives a few minutes after giving my Dad the morphine.

The pill that he was begging for.

The morphine that I was afraid of.

The morphine that came without the nurses and the social workers and the volunteers to help us through this process.

Where in the hell were those hospice people she had heard so many wonderful stories about?

All they got was hospice in a box that had to be refrigerated.

It was just My Mom and I with my Dad yelling at us, “Will you just give it to me for God’s sake, I don’t care if it is the wrong dose.”

He begged for relief as we became more and more agitated and unsteady in the moment, dropping syringes, reading and rereading the prescription and even calling the pharmacist.

And finally I just gave it to him as he gasped for air and I suddenly realized we too had been as negligent as the hospital.

His oxygen tank had run out. No wonder he was desperate for something. How many ways are there to torture a man?

And they left the room when her brother arrived.

Jamie and Dad

IX

Morphine overdose. Her brother horrified that we left him alone with a his father who was fine and talking with him one minute and then was suddenly hallucinating and trying to get out of bed. His strength mammoth as my mother got in bed behind him to restrain him. He could not walk on those big boats of feet filled with fluid.

I call the VNA. I reach out for those hospice people who were supposed to be there and tell him we need help ASAP!!!!!

He responds that giving morphine is an “art” and not that you gave him too much but that if he had been there he would have started with a lower dose. After telling her this for the 4th time she wants to reach out and punch him through the phone…then why the HELL would you hand it over to an amateur?

He arrives at the house and starts talking about the “art” of dosing morphine again!!! She sees red and runs from him to avoid physically clobbering him.

Next Time…I give him ¼ of the recommended dose.

Thank you, Honorary Dr. Brother James. It says you can give it every 30 minutes. One quarter of a dose lasted him 12 hours.

Insanity.

X

He lays in bed and sleeps, or so it seems, soundly for days on end.

The question dancing through the house…”when will it happen?”

The family has their own form of hospice in a “Come to Jesus” kind of scene from a bad Lifetime Movie. We all give him permission to go, hands on, tears flying. Sister Lisa actually seems to be cheering him up to the pearly gates. Everybody says their peace and then we all continue to sit with big red puffy eyes, exhausted and we wait.

He doesn’t go.

When will he go?

He doesn’t go.

From the background Cousin Anne tells us, “He isn’t going to go right now, it doesn’t happen like that.” And snaps us out of our delusions that we can will him to go in that moment.

XI

The sleepless nights wear on as brother and sister get up at different times to peek in to see my mother sleeping next to my yes, still breathing, father.

Exhaustion settles into the house and takes a seat on the couch alongside us.

Maybe he is not going anywhere. Maybe he will live forever.

Meals are delivered. They are all amazed at how they just show up and are so thankful because eating and food have not been on their radar.

Dad has not really eaten or had anything to drink for over 12 days.

Unless you count 4 little bird bites here and there. I fed him his last scrambled egg from Lisa’s chickens a couple days ago. No solid food since eating 5 bites of that egg. No water. Nothing.

How does the human body beat on? Especially one we all thought was so fragile?

His Hands don’t even look like his anymore they are so filled up with fluid, boxers hands.

Every moment stretches on as you wonder…when will his last breath be? Who will be with him? She wonders all of these things as she crawls into bed with him and rubs his back and quietly cries for her Daddy while the Red Sox blare on the radio from the bedside table next to us.

“How can something so natural be so unnatural?” son James wonders.

XII

She wakes at 8. Walks downstairs past her sleeping brother and sees her mother making the bed around her father’s still body. His breathing has changed. It is short. Very short. She says, get the morphine.

I know I must give him him the rest of the syringe…the same dose I administered 5 days earlier…it was what he needed. He was hardly breathing.

Mom is on his right. She is on his left.

He opens his eyes for the first time since the morphine began. The biggest widest eyes you have ever seen and he looked over at my Mom and she said, “Look at those big beautiful brown eyes. I love those eyes. They have not been that open in years. I wonder why none of you got those eyes? I am the dominant one.”

“I always wished I had gotten those brown eyes I respond as his eyes then slowly trail to find me on the left. He stares right at me for a moment and then it is as if he is looking to something beyond me. He holds that gaze for what seems like forever before he moves his sights straight ahead and opens them even wider. He was seeing the light. He liked it. He felt peaceful as he took one long deep breath and closed his eyes.

“Is that it?” Mom and I looked at each other. It seemed to be. No pulse.

And then out of nowhere one last little breath just to mess with us as we laughed.

Dad died.

8:15 am on Sunday, September 29th, 2013.

It was beautiful.

Dad and Mom taking flight on Chappy

XIII

She misses him. They all miss him. She is not sure what to do so she talks about him. She remembers him. She reads. She writes about him. She laughs at his Donald Duck impression stored away on her computer. She shuffles through years of pictures and marvels at how great he looked for so long regardless of his health issues. She thanks her Mom for keeping him so healthy for so long. She misses him. Every day.

He was a great man.

He had 9 lives.

He lived every one of them fully.

He was her Dad.

I love this piece because for me it captures all that I want to remember and all that was there during this incredibly intense, scary, weird time. I feel better after reading about others experiences and then writing my own.

What would have happened had I been in a student in class and I was asked to write a recipe or a persuasive essay from one character in my assigned book to another when all I could think about was my Dad? Do we consider the lives of our writers, where they are and what they have to say and what they are interested in reading about?

I would argue that right now we teach the writing and not the writers. We teach the reading and not the readers. We think about checking things off. Persuasive Essay, check, Informational Reading, check, Memoir, check, Close Reading, Check.

What would happen if we trusted and guided readers and writers to know, to figure out what it was they wanted to know more about, what they wanted to say and then focused on helping them discover the best way or ways to read about it and say it? If we gave them the time to read others and think to themselves, “Hey, I could write something like that!”

Reading and Writing are my “go to’s” when I am trying to figure something out, process emotions, inform, wonder, preach, question, express, persuade, create, think, communicate, get lost and so many other things. What if the goal of every reading and writing curriculum was to help our readers and writers see reading and writing as a “go to” and not just a series of assignments to be completed, but tools for life?

And while this all may seem incredibly personal for a blog on education, I believe I am finally finding my stride in that a real and true education is deeply personal.

And I wonder…are we afraid of this authenticity? These truths?

And even as I consider posting this, putting it out into the world, I question myself. Do we want to hear or read these truths? Why do I put it out there? And while I know none of these answers I only know that I will…